Joanne Heim

The Five Carat Diamond

Joanne's trach is out and it has left a small scar. So Joanne has decided that in order to cover up the scar she needs a five carat diamond. It started out as a two carat diamond, but somehow every day the number of carats seems to go up. The irony is that the wound site keeps getting smaller while the number of carats is trending up. Hmmm...

This afternoon Gran and Papa are going to stay with Joanne while the girls and I head for home. It'll feel very strange to have an afternoon at home. For the last few days  I have been coming to the hospital straight from work and staying until Joanne is all tucked in for the night. Gets me home around 8. I just feel better being there to make sure I meet the night nurses and make sure everything is how it should be as she settles in to sleep. 

We had a great nurse last night who realized that Joanne was prescribed her sleeping meds at 8 and was then scheduled for more meds at 9. So they were giving her something to help her sleep only to wake her up an hour later! Craziness. So the very sharp nurse moved all of that around so that it all happens at 8. But that's the type of thing we get to do to advocate for Joanne (even though it's a little thing). If one of us wasn't here it'd probably still be the other way.

And they are going to up Joanne's Ambien. She is still waking up in the night, which means text messages to me, and I can only assume, to others. This morning she was up at four. So we are going to try to give her a better shot at sleeping the whole way through the night. 

This could be a big week. I am assuming that we will land on a date for her to transfer to rehab. That's one of two really big steps we have left--it's rehab and the bone flap. Personally I would love to see the bone flap go back in before rehab so that she doesn't have to take four or five days off from her rehab regimen in order to recover from the surgery. But I don't think that'll happen. In fact, I think her neurosurgeon is out of town. Anyhow, I'll keep you posted on what big things happen this week.

The biggest news is that Joanne is talking. Now that the trach is out and the incision is healing up, she is able to speak. The volume is still low and I can tell that it's still an effort for her, but she is most definitely up above a whisper. How cool is that! She is no longer relying on writing things down or hand gestures. I love it! The first thing I was pulling for was to see her eyes again. Then is was to hear her voice. So those two have been accomplished. So now for the really big one: to see her walk. She still has total paralysis on her left side, so I am going for a pretty big miracle here but why not?

Dr. Dobson asked me the other day on the radio how we could all be praying for Joanne. My answer flew out of my mouth before I even had time to think about it. I said, "Pray for her total and complete healing." What a better way for God to bring glory to his name then to restore my girl to 100%. What a story we would have to tell! But you know what? God has already done so much, moved so far in her healing, that I'll gladly take whatever more he has to give and praise him for whatever that is (but I'm still gonna pull for complete recovery).

One last thing: Please mark your calendars for the evening of March 18 to come to a special service for Joanne and Heather at Cherry Hills Community Church. It's going t0 be a time of praise, worship, prayer and teaching. Please come! More information to follow.

Prayer requests:

1. Wisdom for the doctors, therapists and case workers about when to move Joanne to rehab, and furthermore when to replace her brain flap.  These are big decisions!

2. This is a very practical one: good relations and the cooperation of the insurance company. Papa has graciously offered to manage the whole billing process which is already proving to be a lot of work. We really need Kaiser to work with us and not make us jump through too many hoops to get things covered. I think we are in for a long haul!

3. Praise for Joanne's continued progress! The staff is talking about how remarkable her improvement is. And they're right! Every day she is moving forward. This is apparently atypical for stroke patients who usually improve and then plateau for a couple days before more improvement occurs. Joanne is improving every day! Praise, praise, praise!

Toben

Tangible Evidence That God Is Real

Another great post from Joanne's Dad!

Do you go through periods when God seems far off - perhaps even wondering if He is really real?   My daughter Kristen has blogged about how "Jesus Calling" has ministered to us ( http://khphotography.net/blog/ ). May I encourage you by His tangible comfort to me?

 Have you been reading when a family member comes silently up behind you, and yet you were suddenly aware of their presence?  Before you heard them you were impressed - even overshadowed?   I am not superstitious when I say that

Something very similar happens to me when Jesus is near.  Many believers will say they felt sure the Lord stood near while they have been in prayer, or hearing the Word, or meditating.  Since Jesus has ascended to His Father, there couldn't be such a physical impression of Jesus' presence today; but yet His presence impresses our souls.  There are influences of mind upon mind that are beyond science.  I have discerned the special presence of the Spirit with me by a consciousness as sure as that by which I know myself.

 How has this occurred?  My closest brother in Christ introduced me to George MacDonald last fall.  He grabbed my attention when I read that CS Lewis said "George MacDonald was my master"; so I was already reading him before Joanne's stroke.  MacDonald was a Scottish pastor before he became the John Grisham of 19th century England.   But his works are so hard to find, I bought a Kindle when I saw I could purchase all 50 of his books for $1.79!  I was reading "Anals of a Quiet Neighborhood" on Jan 11th.  For you dear Siestas who love Jan Karon's Mitford series, move Father Tim to 1867 as a Church of England vicar in the small village of Marshmallow, and you'll be right at home.  Since Jan 11th, I've bookmarked dozens of places where I was reading something that PERFECTLY matched what was going on in our lives at that moment.  This might happen once in a while, but dozens of times - when the words were written 150 years ago?  No - this is the Spirit's work alive with vitality today!  May I  quote one for you?

 I read this on the day Joanne first moved her right toes:  Connie, the vicar's daughter, is paralyzed in bed after being thrown from her pony. “‘Papa, papa!  I moved my big toe!  I did indeed.’ We were all about her in a moment.  But I saw that she was excited, and fearing a reaction I sought to calm her.  ‘But, my dear,’ I said, as quietly as I could, ‘you are probably still aware that you are possessed of two big toes:  which of them are we to congratulate on this first stride in he march of improvement?’ She broke out in the merriest laugh.”

One toe moving; one to go.  Thank you for continuing to pray for Joanne's left!   

Chuck Friedenstein; Joanne's dad

 

Somedayim going to go home and walk and run.n

Bye Bye Trach

Joanne got her trach out today. May seem like a minor deal, and it is a procedure that only takes a few seconds to do, but to me it feels like a very big deal. For one thing, it's really nice to not have to see some foreign object sticking out of her neck. For another, it feels like a further step in the right direction for Joanne's recovery. For another, it's got to be more comfortable for her. All in all, I am pretty excited that she is trach free.

Another cool thing is that Joanne got to go outside today. Her two very determined friends Y. and K. got her bundled up, loaded into the wheel chair, down the elevator and out the door into the sunshine. I am afraid to ask how exactly they managed to convince the staff that taking Joanne for a field trip was a good idea, but they pulled it off. Of course Joanne had her trusty (and now decorated) helmet on. Joanne told me that she loved the fresh air and sunshine.

Joanne had a few other visitors today as well. I think it made the time go by more quickly for her today. Her friend S. is a real prayer warrior and just covered Joanne with prayer while she was here. She even anointed Joanne with oil! I can't tell you how powerful all the prayers of God's people have been throughout this process. I talked to the head physician at the hospital and Joanne's occupational therapist today and they are both totally blown away by Joanne's progress.  She is progressing so rapidly! They don't really have an explanation for it, but i do: prayer and support of friends and family. And all to God's glory.

I am glad that tomorrow is Friday and that the weekend is coming. The pace changes a little bit, things slow down some.  Some contingent of us will still be at the hospital all day Saturday and Sunday, but things are quieter and there is a lot less activity; no doctor's rounds, no therapy. Besides nighttime, it is my favorite time at the hospital. Plus the girls will get to be here for a while which Joanne really enjoys.

In fact, the girls were here this afternoon for about an hour. Joanne was really missing them and what mama wants, mama gets! Made for a lot of driving but seeing Joanne light up when they came in was worth it.

Anyhow, it's dinner time now: chicken salad on whole wheat with tomato and lettuce, pea salad (a favorite of Joanne's) and cherry pie for desert. Not too shabby. After that we brush teeth and I tuck Joanne in for the evening. Of course she doesn't really go to sleep--she has too much texting to do! But maybe, just maybe, she'll sleep through the night and won't text me at 3 a.m. just to say hi.

Prayer request:

Just one tonight: sleep for Joanne. Anyone who has spent the night in the hospital knows how tough it can be to get a good night's sleep, but I would love for Joanne to have that tonight. She was awake and active all day and I know she's tired. So let's just pray that that translates into peaceful slumber.

Toben

YHINHF IB NY KRGY DJZA ADS HVXZ VTBC ZBD TUBGKT,,, NT KUOM GIIT HOOY NOFT, YONHUT, I GIGUTR YHSTD;S FITTZ BE FUUXN EVEV THIYGH UTD YBCUBFUR DNG FIYUS HURTD

Translation

Joanne wrote this great blog post below. I am going to attmept a translation just for fun. I couldn't be more excited to see her blogging again, even if it is one handed!

::Translation begins:: 

My hands are still free and Toben brought my computer, so I thought I'd check in quickly. Then I have no idea what she says next but I think it ends with...before and say hello. Here's me waving hi.

I love having visitors. It makes time pass more quickly, which is good because it gets kinda boring around here.

 I've had quite a few visitors...no idea...and my parents are here all day almost everyday. Toben is usually here too. Friends have flown in from Arizona and Seattle but I missed it since I was in a coma. They have promised to come back and I've promised to stay awake :)

::Translation ends::

Now that I think about it, this is the last time I'm going to translate because Joanne can speak for herself now, even if it is a little...interesting to decipher. It's all part of the fun, isn't it? I am just blown away that a few weeks back the girl was in a coma and now she is blogging again! I wouldn't have believed it.

And you should hear her talk! Her trach is capped so it's a lot easier for her to do so now. If the trach comes out all together it'll be even easier. Actually most of what Joanne does would be considered whispering. But she can talk. Gran and I really push her about it--we have to tell her to "talk deep" and when she does the words come out louder, but she does have to work at it.  Joanne says that Gran and I are "nags" but we don't care--we just love to hear that voice!

Got to talk to one of Joanne's respiratory therapists today and he said "you guys are always here!" meaning the family. I said, "Well of course we are!" He said that patients who have family and friends surrounding them get better because they have encouragement and motivation to do so and that patients who don't have support tend to either not get better as fast or at all because they don't have reason to.

He attributed Joanne's amazing progress to the support that she gets. And it's not just those of us that get to hang out with her in person: it is everyone praying, commenting, texting, emailing, and sending cards and gifts. Joanne is surrounded with love and support and God is using his people to do miracles. I love that! 

I got to come home a little early from the hospital and Papa is taking the late shift. Means I get to sit down to dinner with Gran and my girls tonight. What a treat (and much needed)!

Prayer requests:

1. We have to continue to pray  for those who are suffering alone at the hospital. This is as much an encouragement to myself as to anyone else. I hate to think about how lonely so many of them must be. I don't want to suppose as to why they are alone, but I want to pray for their encouragement, regardless of where it comes from.

2. Joanne still has headaches, a numb left foot and shooting pain up her left leg. In fact she texted me at 5 a.m. to come to the hospital and rub her foot! Fortunately a nurse stepped in and took care of it. But we would all covet prayers that she would be out of pain. 

3. I have sought meaning in what has happened to Joanne since January 11--the classic "why her" syndrome. But I am convicted that God will use this to draw someone(s) closer to himself. So please pray that God would use Joanne's situation to draw other nearer to him. I would rejoice to hear a story someday of someone who came to Christ as a result of what has happened!

Toben

Visitors

My hands sre dtill free dnf Roben brought mt cuputr , do i yhought i'd check in qrtckly ::psudddr to tsise yhr bef dor  snd say hello::here'd me waving hi::  

 I lont hdving vifitors.. it makes the time pass mire quickly  

 

, ehich is goodcause it gets kinda birung around here

 

 

 

I'ne had euite a few visitors, which uu=ived and my psrents sre here all day almorst every day Toben is ususly here too Friends hsve flown in fromFrizon dnd Seattle, nut i missed it since I esd in s coma   )hey;;;;;;;;;;;;;ve promised to come bsck and ''i;ve promidr to ne awake:)" 

 

The Simple Wife Archives: Dec. 29, 2010

Adrianne writes:

She inspires me in many ways, but one main way is how much she loves doing things as a family. How she can take a day such as new years and really make it about setting goals AS A FAMILY, loving on each other, thinking of others, etc. What an incredible woman!

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Resolutions, themes, beginnings

In the past, we have done resolutions for the new year as a family. Kept them in time capsules hidden away until next year, put them on a sheet of poster board to see all year long. Planned, dreamed, set goals.

New Year's is coming and I'm not sure what we're doing as a family to mark it. Yes, we'll be heading to Mom and Dad's for the Rose Parade and black-eyed peas and thank you note writing (except for Audrey, who already got hers done in record time!).

But we need some time to dream together, to talk together, to set some goals together about what we hope this next year will hold.

I'm thinking the poster may be in order once more. There's something about writing down our hopes and dreams and goals that makes them more real, more solid, more tangible than just talking about them. And hanging that poster on the basement door keeps it present, so that we remember what we've dreamed and hoped and do really want as the year progresses.

At the same time, a theme is emerging as I pray and journal and read. For me, 2011 is going to be marked by LOVE. I want to pay closer attention to how to love the people in my family--in ways they need and receive, rather than just how I prefer to love them, what's most convenient for me, or most comfortable. 

Do you make resolutions? Pick a theme? How do you mark the beginning of a new year?

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In the comments section, leave the link to your favorite Simple Wife post. Be sure to include your name, blog (if you have one), and a sentence or two about why the post is meaningful/encouraging to you. The Simple Wife Archives are posted Monday, Wednesday and Friday mornings.

A Father's Hug

Here is a great guest post from Joanne's dad!

But while he was still a long way off, his father saw him, and felt compassion for him, and ran and embraced him & kissed him.   Luke 15:20

 
While Joanne hasn’t been able to give hugs, Audrey and I have found that if she stands one stair above me, we’re matched for a good squeeze.  It really helps – both her and me.  Emma stands on a chair, but that makes her just a bit too tall.  Only Kay, Joanne & Kristen fit just right.  And until Joanne is again vertical, this dad is waiting until he can run and embrace her again.  Please go find your loved ones now and do the same.  But if you lack a nearby loved one, you do have a Daddy who is patiently waiting for us to recognize our starving condition, and admit our sin and repent (Lk 15 17-18).  And HE gives the best hugs in the entire creation!
 
Yes, Joanne is sick, but alive in Christ - forevermore.  This blog is far more than a gripping medical story.  It’s a record of daily concrete actions by the Spirit of God living in this family – not because of any goodness in us, but by the sovereign love of the Father overflowing through your prayers that are presented by His Son seated at His Father’s right hand interceding for us.
 
Chuck Friedenstein, one blessed Papa

 

Fair Warning

Joanne has gotten her iPhone back. She has asked for it for a couple of days and I honestly didn't think she was in a position to use it, but I figure what Mama wants, Mama gets. As soon as it was in her hand she started texting, checking FB and Twitter. The texting is the thing I'm warning you about--you may get a text from Joanne at any hour of the day or night. And because her motor control isn't the best yet, it might be kinda hard to read, but she is good enough that you'll get the drift of what she is trying to say. It's actually pretty cool! Feel free to text her during the day--she'd love to hear from you. 

Where did the weekend go!  

Prayer request (there are actually a bunch but I'm going to stick with one):

We are with Joanne all day every day until about 7 p.m. We usually try to get Joanne settled in and ready for sleep, but she isn't always asleep when we leave. My prayer is that she will rest well while we aren't with her and that she will be at peace.

Toben

 

 

 

The Simple Wife Archives: Oct. 13, 2007

Julie M. writes:

This post has such a powerful sentiment. How amazing that her own words call forth such comfort and wisdom.

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Freudian slip

Last night, Toben and I were talking with a friend in pain.

"You know if you need help, you just pick up the phone and the calvary will come running," he said.

"Don't you mean the cavalry?" I laughed.

"Both," she said. "Calvary and the cavalry."

What a combination! And isn't that how it should be? Christ and the power of Calvary is there in our troubles; community as the cavalry should be there too.

I love the lyrics of this song, Mighty is the Power of the Cross:

What can take a dying man and raise him up to life again?
What can heal a wounded soul?
What can make us white as snow?
What can fill the emptiness?
What can mend our brokenness?
Brokenness

Chorus:
Mighty, awesome, wonderful
Is the holy cross
Where the Lamb laid down His life
To lift us from the fall
Mighty is the power of the cross

What restores our faith in God?
What reveals the Father's love?
What can lead the wayward home?
What can melt a heart of stone?
What can free the guilty ones
What can save and overcome?
Overcome

(chorus)

It's a miracle to me (2x)
and It's still a mystery (2x)
It's a miracle to me
The power of God
For those who believe

Mighty, awesome, wonderful
Is the holy cross
Where the Lamb laid down His life
To lift us from the fall
Mighty is .......
Mighty is.......
Mighty is the power of the cross

Thank You for the cross (2x)
Love the cross (2x)
So Powerful...... ohhhhh yeahhh
What can take a dying man?
And raise him up to life again?

Worship You Jesus
By your wounds we are healed
By your wounds we are saved
Mighty is the power of the cross (2x)
Thank You Jesus for the Holy cross

Send in the Calvary indeed!

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In the comments section, leave the link to your favorite Simple Wife post. Be sure to include your name, blog (if you have one), and a sentence or two about why the post is meaningful/encouraging to you. The Simple Wife Archives are posted Monday, Wednesday and Friday mornings.

An evening of worship and outreach....

Hi everyone,

It's me....Kristen....also known as Joanne's little sister.  It's amazing how you never lose that title, no matter how old you get. I'm sure I'll be known as "Joanne's little sister" even when I'm 80.  Oh well....proud to carry the title.

Toben asked me to pirate Joanne's blog for a quick word.

There is something we want to share with you that is so exciting and we want YOU to be a part of it.  This is an opportunity we really don't want you to miss!

I have to say, one of the most amazing things about this whole experience with Joanne are the stories I hear on an almost daily basis about how her story is touching someone's life....how she is ministering even while in a hospital bed.....how the non-believer has found themselves praying for Joanne....how someone has found their "quiet time" again.....how children are daily praying for Audrey and Emma....how people have felt the need to witness.....

It's amazing. 

Four weeks ago, Joanne started coming out of her coma as we all held our breath and stormed the gates of Heaven on her behalf.  We wanted her to come back to us....and she has.

I have never in my life read, heard, and seen so many praises being lifted up at one time.  This is an OPPORTUNITY for those praises to be lifted up TOGETHER, in ONE VOICE.  So please come. 

Heather Noce is a friend of a friend (we think she and Joanne may even know each other) who suffered a brain aneurysm and subsequent stroke, just weeks before Joanne suffered her stroke.  They are both young mothers, with young children.  Both are involved in various ministries, and both are recovering at the same facility.

Their stories and paths are different, but very similar.  Heather's sister in CA contacted me a few weeks ago to see if I would be interested in the idea of a corporate praise and worship night on behalf of Heather and Joanne. 

Ummmmm.......yes?

So here it is.  God has orchestrated all the details and pieces are still falling into place.  It is going to be a powerful night and is also an opportunity for outreach.  There will be a full gospel presentation at the end of the evening.....as I know Joanne and Heather would want.

We may need some help with various parts of the evening, and if a need arises, we will let you know!  But most of all, we want you to come. 

See you there, and please spread the word!!!

 

PS.  The above "flyer" is available in JPEG format if needed.  Please contact me at [email protected] if you would like it. 

Lazy Sunday

Been hanging out here in Joanne's room for the last few hours and as usual, Sunday proves to be a quiet day. Joanne got a bath and got her hair washed, which she loves. Spent the morning with her mom and dad and I am on the afternoon and evening shift. Joanne did have a visitor this afternoon but she got here about 15 minutes after Joanne hot her pain medication. That meant that Joanne was pretty alert for the first 15 minutes of the visit and then started to fade. But she was still very pleased to see her friend. 

Can't believe tomorrow starts a new week. All the days seem to run into each other because the routine really doesn't change that much for the family. Being with Joanne at the hospital is a seven day a week opportunity. Of course it allows us to mix up the visit times a little allowing Joanne's dad to be here in the morning when Joanne is most alert. And it allows the girls to come for extended visits. But there is no therapy on the weekends so Joanne really gets to rest up.

Since tomorrow is Presidents Day there will be a bit of a change-up as well. Papa is off work so he and Gran will be here in the morning. The girls are coming to the Springs with me and they will be with Nana in the morning and then will come with me to the hospital in the afternoon. Then on Tuesday it will be back to business as usual.

A few decisions will probably be made this week: when the trach comes out, when Joanne goes to rehab, etc.. We have really felt good about our time here at this hospital and are happy to stay a bit longer but at some point in the not too distant future Joanne will be ready to take the next step. I would love her to be here for as long as possible so that when she does go to the rehab hospital she is ready to rock and roll! 

Joanne is resting now and her dinner will arrive in about an hour. She'll eat (although she is really not a fan of the hospital food) and then we'll get her situated for the night. Might sneak in another orange popsicle at some point. Her highlight today was some smuggled banana bread. She also has switched form Sprite and Fresca to Diet Coke-way to go girl! 

Wow this is a pretty boring post, but it has been a pretty mellow day. 

Prayer requests:

1. A good week of therapy for Joanne. Hope to see her become stronger and more capable every day. Also, please pray that she would experience a great sense of accomplishment that will buoy her spirits. The therapy causes her a lot of pain and discomfort so feeling like it's accomplishing something for her is a big deal.

2. Joanne has written a number of times today that she wants to come home. The reality is that she is probably a couple of months away from that day. Please pray for peace for her as she puts up with hospital life which can be difficult--anyone who has spent more than a couple of days in the hospital understands what I'm talking about. 

Toben

P.S. We are doing a big praise and worship event on March 18th at Cherry Hills Community church from 7:00 to 8:30 For Joanne and Heather Noce who has also suffered a stroke. Please block it off on your calendars! It's going to be an amazing time to celebrate God's goodness even in the midst of hard times. More information to come soon.

Trouble

Gotin trouble for playing twith the butttoondsds on my bed$$$
Ruhr nurse threatened po rite my arms. Down !;) I'm not sure he reajhhyvwoufkld buut I sure got a good talking to.

Ministering to Body and Soul

I got to see something cool today. Joanne had a couple of special friend come this morning for a little while and each of them, in there own way blessed Joanne. One sat and quietly talked to her, asking her questions and encouraging her about her progress. The last time this friend had seen Joanne she was in ICU at Littleton Adventist and Joanne was in pretty rough shape. Today she saw a whole new Joanne; one that could communicate with her, some by voice, some by sign and some by writing. It was amazing to watch this  strange medley of communication styles allow for a good and meaningful interaction that Joanne was able to have with a friend dear to her.

Then a couple who has been deeply involved in all of this process came for a visit. They are inside the "circle of trust" for me personally and have bared a lot of the burden from big stuff to little stuff. J. (the husband) calls every day at least once to check on me--not on Joanne, but on me. Today he actually called three times, but that's another story.

One of my favorites acts of service to me is that K. (the wife) took my cell phone from me for the better part of 48 hours when this all started and screened all the calls and texts that came in. You can't imagine what a blessing that was considering the extent to which my phone "blew up."

But today K. was there to give Joanne a facial, and to be honest it reminded me of the women who washed Jesus feet. She was so tender and so caring and so deeply desirous of blessing Joanne and that really moved me, and it blessed Joanne so much too. And the crazy thing is that K. and J. drove 45 minutes to be there...and oh, by the way, they are in the middle of moving! So they drove all that way just to minister to Joanne's body...and then they left. That is a servants heart in action.

Then Gran and Kristen came down and ministered to Joanne both mind and body even further in a way that only a mother and sister can. 

Made me come to a huge realization: even if Joanne was to progress no further then she is today she is capable of having a good quality of life. For a while in the worst of it I think we all wrestled with what that might mean and what really constituted a good quality of life. But to see joanne, smile and even laugh, to communicate thoughts and feelings, to enjoy human touch and voice, to experience love: all of it means that she has a life 100%, unarguably worth living! This, dear reader, is simply a miracle. When she was in her coma I think we dared hope that she would get to where she is today. But she is not only "here" she is making strides each day that blow all fo us away. God is good!

The real miracle is that Joanne has made all this progress and that she is just getting started! She has months of therapy ahead of her and the prognosis is that she is going to improve by leaps and bounds. I wait with such expectancy to see what happens!

And countless others (litterally countless) have done so much by lifting her up in prayer, sending cards and notes, helping out financially, leaving blog comments, providing gifts, and providing meals. I think I have said it before but I'll say it again: there are no words to express the depth of thanks and blessing we are experiencing.  It is jaw dropping and overwheling and breathtaking and wonderful. I will never doubt the power of the body of Christ lived out again. When God moves in the lives of his people he moves! Amen and Amen!

Prayer requests:

1. Both Audrey and Emma are a little under the weather--Emma has been running a bit of a fever and Audrey just feels blah. I think all if it can be directly attributed to being emotionally exhausted. What a tough time for a kid! I know the stress we adults are under and I can only imagine what it if like to be 10 or 12 and dealing with all of this. So, please pray for there bodies and hearts that God would protect both.

2. Joanne is still having headaches and dizziness. Totally to be expected but miserable for her none that less. Please pray for cessation of pain and that she can be off the heavy duty painkiller that it takes to make her comfortable.

3. Please pray that just one person will draw closer to God and accept Jesus as Lord through this experience. As I seek the "why" of all this, I am continually brought back to the notion that if just one person accepts Jesus Christ as Lord and Saviour, then God will be glorified even in Joanne's suffering. I know that may sound a little "churchy" but I was reminded tonight that every person is an eternal being, one that will spend eternity with God or eternity separated from him. So may Joanne's story, her suffering her strength and her healing be used to draw people near.

Toben

 

 

Audrey's List of Guess Whats...

So here are a few A-MA-ZING things that happened today...

1.    Mom got to go into a REAL wheel chair!

2.    We went to the gym and played Wii - She beat me hard at Wii bowling!

3.     She's eating non-mashed food!

4.    She grabbed my/her phone and text dad and a friend!

5.     She got 2 popsicles... she was so happy!

6.     No more yellow gowns!!!

Prayer requests:

1. Her headaches would go away or minimize.

2. Shoulder pain would do the same.

3.  We all sleep well.

 

Short post... Oh well. 

Post ya later, Audrey

The Simple Wife Archives: Nov. 8, 2010

Kath writes:

Her observation that "But we can say that in the midst of the not alright-ness, God is still faithful, still good, and actively working good," just seems so appropriate to the situation right now. What happened is NOT all right, but she's making such progress, and we can rejoice that God is good. Praying for you!

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Back to normal life

Toben and I decided we need a term for the opposite of deja vu. For those times when (instead of feeling like something has happened before) there's a feeling of something that's supposed to be happening that isn't.

Pretty much the feeling we had all weekend around here. I felt like I was waiting for something, that there was something just out of reach that was supposed to be, a shadow of reality not quite materialized. Hmm...like a trip to Arizona, perhaps.

Any ideas?

Anyway, we're back to real life around here, and it was good to wake up this morning at home as planned, right where we belong, looking ahead to a new week. I'm hoping Audrey feels the same way when she wakes up later. This weekend kicked her tail and left me feeling very much like this as a result:

 

 

If you're a mama, you get it. Do NOT mess with my girl. 

And being faced with questions I can't answer, her feelings of disappointment and rejection turned inward so she thinks she did something wrong, holding her while she cries and her heart breaks with the exhaustion of plans being made and cancelled, made and cancelled...well, yep, that picture pretty much sums it up.

Yet.

God did work a whole lot of good out of the circumstances of this weekend. How do I know? I made a list this morning. (Of course I did.)

And the thing is, the list doesn't erase the heartache, it just sits next to it. The good God works out is an AND, not an OR. So often, I think we feel like we have to deny the bad to find the good. And I just don't think that's right. 

The cross of Christ was something God worked hugely for our good. But that good didn't erase the agony of it. The pain, the sorrow, the separation was real, and to deny it would somehow cheapen it.

We don't have to pretend like everything's alright when it's not. But we can say that in the midst of the not alright-ness, God is still faithful, still good, and actively working good. 

In Lamentations 3, Jeremiah (who most believe to be the author of the book) remembers his sorrow, recalls bitterness, acknowledges affliction. We sometimes forget these verses:

I remember my affliction and my wandering,
    the bitterness and the gall.
I well remember them,
    and my soul is downcast within me.

And jump straight to these ones:

Yet this I call to mind
    and therefore I have hope:
Because of the LORD's great love we are not consumed,
    for his compassions never fail.
They are new every morning;
    great is your faithfulness. 

Funny isn't it--that we know the end of this verse so well. But there's something to be learned from the beginning too, I think. Somehow God's compassions seem even greater when they follow on the heels of "well remembering" the things that have hurt.

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Sick and Tired

Emma spent the entire day at the hospital today (9 hours) and by the time we left she wasn't feeling well. Got her home and took her temperature--100.7. She immediately put on her PJs and laid down on the couch while the rest of us ate dinner. As soon as we were done she asked if she could go to bed, which is where she is now. In fact she is sleeping here right next to me as I type this. The good thing is that because Joanne is in isolation, Emma wore a surgical gown and latex gloves all day so there is really no way she could have passed anything along to Joanne.

I'm actually surprised that she hasn't gotten sick before this. Emma was the one who found Joanne after her stroke. Emma is the one who couldn't bring herself to see her mom for a month. Emma has been carrying around an adult sized portion of stress and fear. And today it caught up with her. So now she needs to be nurtured back to health. I think she is going to the Springs with me in the morning to my mom's house where she will be waited on hand-and-foot. Then home to Gran's where she can watch the food channel all afternoon where she will be further nurtured. Fortunately she is on winter break and won't have to miss any school during her recovery.

All of us are pretty fried today. We decided at dinner that there is a unique exhaustion that comes from the stress of watching a loved one struggle or suffer. And Joanne is doing some suffering. Her left shoulder has been bugging her for some time--her shoulder joint is extremely stiff and the only therapy for that is to heat it up with a hot towel and then stretch it, which is very painful for her. On top of that she has been complaining of headaches and now dizziness. This is my favorite "no duh" symptom. The girl has half her skull missing and a scar to beat the band and has suffered a major brain trauma/injury. Of course her head hurts! They are tyring to stay on top of it with medications but what they are giving her makes her loopy.  Headache and shoulder ache minimized, but personality and function become minimized as well. 

So we are all a little zombie-like, staggering through what has to be done. I think I can speak for all of us when I say that we are exhausted. It's the kind of exhaustion that a good night of sleep won't easily fix. I think the good reports of the last few days provided a shot of adrenaline that helped us get through, but this afternoon sort of robbed us of some of those "up" feelings. I guess it is probably something that just comes with the territory. But I'll say it again, there is a unique kind of weariness that comes from watching a loved one suffer.

In fact yesterday I was on the elevator with a women and could tell instantly that someone she loved was suffering in the hospital. She wasn't crying or anything but I could just look at her expression and see the look in her eyes. Turns out her brother had a stroke (his second) and things weren't looking good. There is just a haunted look in the eyes of someone going through something like this.

I have tried to avoid having that look in my own eyes: I want to be upbeat and victorious (!) but tonight I know I have that look about me. I see it in the faces of the family and especially in the face of precious Emma who couldn't even make it to the dinner table for Gran's pot roast--any of you who know Emma (the carnivore of the family) will realize how badly she must be feeling to not eat a pot roast. We are weary. 

That doesn't mean there isn't a lot to be encouraged by. There is a lot to be thankful for--I'll post more on that  tomorrow. But I think for now most of us walking through this are just sick and tired. We want our girl back.

Prayer request:

Please pray that Joanne pain will go away. Simple as that.

Toben

 

10 Things Joanne Can Do

Here is a list of  10 things Joanne can now do:

1. She can stay awake almost all day (with a little cat nap here and there).

2. She can participate in her three primary therapies (OT, PT, and speech) each day and is improving in every one of them. It is hard work for her but she is rising to the occasion each day. Her therapists rock! 

3. She has all sorts of sign language that she uses to very effectively communicate but...

4. She is also able to mouth words and when she really puts effort into it she can make sound. We are all pushing her to put in the effort and speak. Her therapist says that she has gotten used to not talking over the last month and her brain has to do some "re-wiring" to get her talking regularly.

5. She can eat an entire carton of yogurt in about four bites, feeding herself.

6. She got to drink Sprite! She has been asking for Sprite for a week so this a big deal. She got a special cup and is now allowed to have all the Sprite she can drink. I have a feeling I will be up and down the elevator transporting Sprite from the cafeteria for the foreseeable future.

7. Apparently she can send email from her iPad. I left her alone with it on her lap for ten minutes and came pack to her room to find her drafting and sending email. I have no idea what she sent or to whom, so if you got an email from Joanne, I'm not responsible for the content! She has limited fine motor control so chances are the emails she sent won't make alot of sense. I just think it's a kick that she tried.

8. Apparently she also took Kristen's iPhone (which looks just like Joanne's) and called Audrey. I also understand that she may have sent a text message, again, to who knows who. Like I said she doesn't have great motor control yet so I am sure the message was "interesting" considering the size of the iPhone keypad.

8. She can make a joke and laughs at the banter that happens around her when we are all in there. Her sense of humor is fully in tact.

9.  She can write up a storm on a piece of paper with a Bic Crystal pen (her pen of choice). She can also write on the iPad but seems to like pen and paper for long-hand. However she has clearly demonstrated that her real desire is to be typing. I downloaded Pages for her so I would imagine that be next week she'll be typing everything on her spiffy iPad.

10. She can thrill all of us who are fortuante enough to be with her every day. When we look back at where she was two weeks ago all of this is truly amazing. God is good!

Prayer requests:

1. Joanne is in some pain. She is complaining of shoulder pain on the left side and of a persistent headache (no surprise considering her bone flap situation). They are trying to regualte her meds to keep her comfortable. Please pray that her pain goes away--we all hate to see her suffer.

2. Here is a big one: she is still paralyzed on her left side. So our bold prayer for Joanne is that she would recover movement on that side. If she does, it's going to take an enourmous amount of work on her part to make that happen. Pray for her strength and God's healing hand on her left body.

3. Pray that Joanne finds her voice. She is mouthing words and can sort of speak, but very, very quietly. Can't wait for her to make herself heard! Those who know her well know that she has a lot of good stuff to say. Please pray that through hard work and through God's healing hand that she will be talking out ears off before we know it.

Toben

From Joanne!

Here is the message that Joanne wanted me to send out today, which she wrote out longhand in her notebook:

My Dear Darling Bloggy Peeps,

Ask anyone in the hospital (except maybe Pierre who is in charge of maintenance and such) and you'll unanimously hear I have the best room in the joint. And it's true! I am literally surrounded by love and prayers and God's word that you have sent so generously. One can instantly feel the difference--how God uses us to love each other on his behalf. 

Joanne

Not too bad for a gal who was in a coma three weeks ago!

Joanne is referring to the hundreds of cards, letters, verses and blog comments that have been sewn into bunting and hung all around her room.  I think I have mentioned before but her room is decorated to the max. In fact, the hospital was undergoing an inspection of the facility over the last two days and the staff hung a "do not disturb" sign on her door so the inspector wouldn't come in and see the extent of the stuff hanging on every flat surface in the room.  We were totally covert! Imagine that the room is one giant bulletin board and every inch is covered. Pretty cool that the hospital stood behind us and allowed us to go so crazy in her room. I think everyone on the hospital staff has stopped by to see it and it has definitely made a big impression.

Prayer Requests:

1. Mom and Dad had a great visit to one of the rehab facilities that Kaiser works with and they loved it! What a praise! This next move is a big one and being excited about where Joanne is headed next is a great relief. There is one other facility to look at but at least the first one was a thumbs up winner! Praise, praise, praise!

2. Pray for Joanne's spirits. We try to keep things up-beat and positive in her room but at times she looks sad, discouraged and frusterated. Please pray that she would have that peace that passes understanding.

3. Joanne is in some pain in her head and shoulder. Pray for relief without the need for heavy painkillers. So far we have been able to stick with Tylenol for the most part which allows her to stay alert, whereas the heavy duty stuff knocks her out. 

Toben

Firsts

Today was my first day back at work in five weeks. Went great--many hugs and prayers and warm wishes. Felt like a homecoming. Radio show went great. I tell you what, Ryan and I make a pretty mean team (if I do say so myself). Helps that we have known each other for ten years--there is just an easy give and take that (I think) makes for good radio. Plus our guest today was awesome. So, good to be back at it. Even enjoyed the commute down. I have 50 minutes all to myself to think and prayer and try to clear my head a little. Lots going on up there these days.

A little promotion here: Ryan adn I are going to be talkign about Joanne's stroke adn what the last month has been like ont he show on Friday at noon eastern. Check it out at Grounded Radio.

Drove from work to the hospital and Joanne had a surprise for me. They put in her Passey Muir valve (the one that allows her to speak) and she told me she loved me. Very quiet, very hoarse but definitely there. Not a bad way to celebrate Valentines day! She also wrote me a note asking if I would be her Valentine. Easiest quesiton I've ever been asked.

Joanne is still complaing of shoulder pain and said that she has been having headaches that don't seem to go away. So I talked to the nurse and they upped her pain meds and brough in x-ray to get a shot of her shoulder to see if anything comes up. I am wondering if she didn't hurt her shoulder when she fell in the basement when her stroke started? Anyhow, we should know something tomorrow. Also, it may be tomorrow that we find out if her infeciton is gone so that we don't have to wear these stylish yellow gowns and gloves in her room any more. What a treat that would be! Typing in lextex gloves isn't as easy as it would seem. 

Tomorrow is an important day: Mom and Dad are going to look at Spaulding rehab. This will likely be Joanne's next stop on the road to recovery. I have heard good things about it and will anxiously be awaiting a call from them to let me know what they think. Each step of the way is so critical. Going to Littleton Adventist was sort of a decision made for us--they are a stroke hospital and that's where the ambulance went. But coming here was a choice we got to make and considering the alternative, it was a very good choice! Things here have gone well and most importantly her therapists really seem to know what they are doing.

At Littleton, it was all about the nursing staff. They made that a great experience, if you can call being in ICU for three weeks a great experience. But there are literally nurses there that our family will never forget. At this hospital, it's all about the therapists. The nurses still play an important role, but it is the therapy team that pushes Joanne's progress forward. And they have been top notch. 

The next step, a rehab hospital, will be all about the therapists and therapy. It's this next facility that will bring Joanne the farthest in her recovery. I think I mentioned in a previous post that choosing these facilities is sort of like choosing a college. Tough decisions to make becasue so much is riding on it. A good theraputic program has the potential to change Joanne's life for the better...significantly better!

But today we will celebrate the firsts: first truly spoken words and sounds and first day at work. Both are blessings.

Prayer requests:

1. Pray that Joanne continues to progress in her therapy. She is making significant strides and we'd love to see that continue.

2. Please pray for good pain management for Joanne's shoulder and headaches and that we can find the casue of both.

3. Pray that her infection is gone.

4. This is the big one: please pray for a good visit to Spaulding tomorrow for Mom and Dad. 

Toben

P.S. Joanne did get another popscle today. Going to maybe try her on some other liquids tomorrow and see how she does. I think if she could get a Sprite with a straw she would be over the moon!

 

The Simple Wife Archives: Feb. 14, 2010

A little love note to her hubby last Valentine's Day:

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Valentine

 Dear Toben,

 

 Love, Joanne

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In the comments section, leave the link to your favorite Simple Wife post. Be sure to include your name, blog (if you have one), and a sentence or two about why the post is meaningful or encouraging to you. The Simple Wife Archives are posted Monday, Wednesday and Friday mornings.

Darned Popsicle!

For the last few days thoughts have been forming that finally I finally got clarity on today. Joanne is now at the point where she is going to need as much help with her mental state of well being as with her physical state of well being. We have poured all of our efforts of the last month into her physical health and comfort, but now that she is fully aware of what is happening, we need to start to pay just as much attention to her emotional, spiritual, and mental states as well. 

And a good start would be for her to get a darned popsicle! Terry the speech therapist has created a monster and now all Joanne can ask about is when her popsicle is coming. I have to tell her at least half a dozen times today that I just don't have the authority to give her one and that stunk! I would go to the ends of the Earth for Joanne but I am powerless to give her an artificially flavored, sugary, frozen treat. Please Terry, just one popsicle a day is all we're asking for....and maybe some Sprite (her other big request). 

It's a big shift to have Joanne communicating. A dear friend texted this afternoon and asked if she could visit Joanne this week. At first I said I would check with Mom, who will be with Joanne mornings this week now that I am going back to work. But then I thought, "Actually, I can ask Joanne if she wants visitors." That's a game changer. Joanne is now able to make some decisions for herself after a month of being unable to functionally decide anything. 

I am thrilled that she is communicating. But there is a sadness that comes with hearing her express fear, worry, discomfort, etc.. For a long time it was just about getting the bed adjusted and the pillows in the right place to keep her resting comfortably. But she can put her hand to her head and feel the scar and the indentation and realize that something really isn't how it should be. She can complain of shoulder and arm pain from always being rolled to her left side (she can't be rolled to the right because of the brain flap). She can feel the trach and is aware that she isn't breathing through her nose and mouth. All of that is a lot to take in. And we are powerless to do anything about it other then to explain to her exactly what is going on, the schedule and prognosis for her care and to try to allay her fears, worries, and discomfort...

...or at least get her a darned popsicle!

Prayer requests:

1. Joanne now needs more than just physical care. Please pray that we will know how to best care for her mental, emotional and spiritual needs as well. We'd love to be able to do at least one thing to lift her spirits each day. She has a very, very long road ahead of her and she is going to be bone weary during this journey. Just like a marathon runner needs water stations, Joanne is going to need some things to keep her going along the way, to keep her motivated and energized. Please pray that God would give us insight.

2. Big decisions loom this week: where Joanne will go to rehab and when she will get her bone flap back in. We need information, wisdom and favor from the insurance company for this all to go the way we would like it to go.  Please pray for God's guidance.

3. Please pray that Joanne's tests come back negative for infection this week. We need her healthy in this process. And besides that, we are all tired of wearing gowns and gloves into her room every day!

4. POPSICLES!!!

Toben

What Stress Does

Audrey and I are back at the hospital. She had a minor breakdown this evening and just really needed to see her mom. I don't care what's going on, if Audrey wants to see her mama I am going to try to make that happen. I can totally relate. Sometimes when I'm not at the hospital I get extremely anxious, wanting to be there. My fear is that Joanne will be awake or scared or uncomfortable or in pain and that I won't be there to advocate for her or get her the help she needs or just keep her company. So anyhow, tonight is one of those nights that Audrey (and me too) felt like a night visit was in order. Thankfully Joanne is resting and will probably have no idea that we are here, but it is good for Audrey and I to share this time with her. 

On the drive down here Audrey and I talked a lot about stress and sadness. I was trying to explain to her that everyone handles stress differently. Some people want to eat a lot and some people don't want ot eat anything. Some people want to sleep 24 hours a day and others can't sleep at all. Some people have anxiety attacks, some get depressed, some try to numb out. But it is different for each of us. We decided that the challenge is to not let your stress behavior win. We decided that we have to fight for normalcy--normal sleep, normal eating, normal hours, normal routine. But that can be so tough!

For example: I could sleep 24 hours straight at this point. But I have to fight that and get out of bed every morning and get my day going. I need to do that for Joanne, for the girls, for my employer (starting back to work on Monday) and for my own well-being. Audrey doesn't have much of an appetite these days, but we talked about the fact that she need to fight that, to eat well, to have the energy and health to stay strong for her mom and to do well in school. 

We also talked about the reality that when we are in the middle of a stressful situation, especially one as long term as the one we find ourselves in now, it is really hard to quantify the stress. I think that we know things are stressful now as we walk this path as a family, but when Joanne gets to come home and things normalize (whatever that'll look like) we'll be able to better understand the stress of these days. And we are probably going to go through a period of needing to sort that out, of processing it, of letting go and recovering. I imagine taking a family vacation to the beach when this is all said and done and just sitting in the sand staring at the ocean and letting peace and well-being flood over us and to let the stress ebb away with the waves. Sounds a little idealistic as I sit here in Joanne's room, but...

On another note: I was completely, I mean completely blown away with Audrey's tender care for her mom today. When we got to the hospital Joanne had a hot flash--sometimes the brain triggers weird temperature events and the body has a little trouble regulating all of that. So Audrey sprung into action. We got the AC turned on and Audrey got a cold, wet cloth for Joanne's head. they she rubbed her arms and legs with another cold, wet cloth. And she kept at that for about an hour, working to get her mom cooled down. I just sat in amazement at the responsibility and care that Audrey was demonstrating. I really didn't do much because I didn't want to get in Audrey's way as she met Joanne's needs. What a special kid!

Then Audrey set out to brush Joanne's hair. Again, she gently brushed for who knows how long, trying to get some of the residual from her incision combed out. I can't tell you how it blessed me, and I know that it blessed Joanne even more so. 

Joanne is still writing notes. She really, really wants a popsicle. Unfortunately we aren't allowed to do anything other than ice chips, which Joanne has clearly indicated are a sorry substitute. Maybe on Monday we can get permission for her to have popsicles. Terry from speech therapy is going to try her on yogurt or applesauce or something more solid to see how her swallow is working. 

Prayer requests:

Audrey. Tonight when Audrey was crying and I was holding her how proud I was of her for her taking such good care of her mom. She said, "But I don't want to be the mom !" I took that to mean that she doesn't feel ready to step completely into a care-giver role with Joanne. She missed her mom like crazy and wants her to provide care for her. We talked about the fact that this is just a season and the Audrey doesn't have to be the mom, just that her role is going to be a little different for a time. My prayer is that even though this experience is "aging" Audrey some (see her last blog post), that she would still feel free to just be a kid (so glad she is back at Denver Christian with lot of friends her age). She has mentioned a dozen time how badly she just wants a hug from her mom. I am going to pray that that day comes soon. Also, Audrey is carrying some risidual guilt from a fight she and Joanne had the night before Joanne's stroke. Please pray that that guilt will be lifted and that she'll be at peace.

Toben

P.S. Emma was at the hospital again today and did just fine. She hung out in Joanne's room some and spent the rest of her time in the family room with her cousin. So glad to be over that hurdle with her!

 

 

 

Emma's Visit

You read it right--Emma saw Joanne today. Since Joanne has been writing she has written at least three or four times that she misses Emma. So the decision was made that Emma was going to see Joanne because it is what Joanne needed. So Kristen, in a brilliant move, got Emma to look at some pictures she had taken of Jo over the last few days. That prepared Emma and this afternoon we went for it.

Joanne is sort of in quarantine because of an infection so we have to wear gowns and gloves to be in her room. So we got the the hospital and all got suited up and Emma went in. There was really no drama...Joanne was pretty much asleep. She did manage and "I love you" sign for Emma but that was about it.  After about 15 minutes Emma was ready to get out of there. I think it was just the stress of not seeing mom for the last month and seeing her now for the first time--an overwhelming combination.

We went downstairs, grabbed a Sprite and stood outside for a few minutes so Emma could get some fresh air. We headed back upstairs, grabbed our stuff and headed out, but Emma is committed to go back with Audrey and I tomorrow morning when Joanne will most certainly be more alert. 

As a parent this was a big day. It has been difficult for all of us that Emma had gone so long without seeing her mom. We ached for her. Then, when Joanne started asking for her the stakes went up. So in a semi-simultaneous meeting of the minds, Gran, Kristen and I all sort of decided that enough was enough and today was the day because it was what Joanne needed. It stopped being about Emma.

Anyhow, we got over that hump today. Thankful that we can move forward from this point.  Excited that Joanne will get to see her Emma tomorrow when she is more alert. Special thanks to all of you who have been praying specifically for Emma. Your prayers were heard and Emma was able to take a difficult step today that will lead to a lot of good things for both Emma and Joanne in the coming days.

Prayer Requests:

1. Praise that Emma was able to see Joanne! Looking for this to be a new chapter in Joanne's recovery and a significant time of growth for Emma.

2. Joanne has an infection that we really need to keep in check. She is on antibiotics and hopefully that will do the trick. We will know early next week if the infection has cleared up and then we can go in and out of her room without gowns and gloves--none of us look too good in those yellow gowns. 

3. Big decisions loom on the horizon as far as rehab facilities go as well as some medical decisions. Please continue to pray for oneness of mind for Mom, Dad, Kristen and I as we move our way through the multitude of decisions that need to be made about Joanne's continued recovery.

Toben

P.S. Depending on the analytics I look at, we broke 1,000,000 page views in the last 30 days on Joanne's blog. The interest, support, messages and prayers are absolutely unfathomable and cherished.

iPads and Popsicles

First of all let me say right off the bat that I am writing this post with rubber gloves on. Joanne has a little infection so that means that everyone in her room has to wear a gown and gloves. So if there are more typing errors than usual you'll understand.

This is probably the most excited I have been to write a post so far. Today a few things clicked: first off, when we put on the gowns it gave Joanne quite a chuckle. So Yvette and Kristen start talking about decorating our gowns--they are yellow and we look like a bunch of Easter Peeps running around. I could see that Joanne really wanted to say something.  Not sure how but I think we all could just tell.  I grabbed the closest paper (a medical bill from her anesthesiologist) and a pen and she wrote the words "gun belt." I am sure that was for Yvette's benefit as she is a proud member of the NRA. She wanted Yvette to decorate her gown with a gun belt. It was clear that she was having a hard time controlling the pen on paper and then it hit me: iPad! 

I grabbed her iPad and opened Doodle Buddy (a drawing program) and put the iPad in front of her. At this point Teri, her speech therapist was in here feeding her grape popsicles--much tastier then the ice chips she's been using. Again, we just had the feeling that she wanted to say something. I held the iPad up and with her finger on the screen she wrote, "Are there Otter Pops in the freezer?" At this point we all flipped out. So Kristen asked her what her favorite flavor was and she wrote "orange" in perfectly legible print. Amazing! 

After a that she wrote a note to Emma asking her if she wanted to go get a Frosty after school tomorrow. After that she wrote a note to Audrey telling her how much she loves her. She was also able to write that she was too hot and the she was having some trouble breathing (she had the speaking valve in her trach and it was bugging her). Now, Joanne hasn't communicated with anything other than right hand gestures for the last two weeks (since she has been awake from her coma) and now she is writing sentences in legible handwriting. Holy cow! This is beyond huge!

It means so many things. The first of which is that she is all there, able to write, able to communicate clearly. The second is that we can improve her care. If she needs something, likes something, doesn't like something, she can tell us. No need to stick to yes and no questions any more. 

We are saving every note she writes (with the exception of the Otter Pop note which I accidentally deleted when I was trying to figure out how to use Doodle Buddy). This is going to be her own record, her own words about what is happening. 

I think she's had it for the day--lots of activity and brain work. She is sleeping now. But tomorrow morning when she is fresh I am going to ask her if there is anything she wants to say to those of you reading the blog. I may have to explain to her again just how many people are praying and reading. That'll blow her mind! So stay tuned and we'll see what she has to say for herself tomorrow. 

What a day! Praise, praise, praise!

Toben

P.S. To those who contributed to the iPad fund, it was totally worth it. This is going to be an amazing tool in her recovery. Thanks so much!

Audrey here... 2

Hey its Audrey agian

I really miss my mommy. All I want is a hug from here and her telling me she loves me. I have been getting so many hugs at school and I love it. It's really wierd that I come in to class and not seeing my mommy in her pajamas, reading a book and planing the school day. I miss that because our day would be really laid back and lazy... School and alot, I mean alot, of homework is what our days need to be in this time and place. 

Alot of times I dream about her, were playing on a playground, on the swings and laughing and talking. It goes something like this:

I say, "Mom I love you, and I miss you..."

"What? Im right here..." she replys 

"No, no your not your somewhere else I can feel it"

"Your right, Im not here Im talking with Jesus somewhere quite, light, and far, far away"

Then she starts walking away 

I call out to her, "Mommy come back, take me with you! I must be with you."

She comes back and sais, "You can't come with me Audrey, but I'll come back soon."

"I love you mommy"

"I love you, too!"

She gives me a hug and starts running, running away with out streached arms towards a bright light, the sun, and as soon as I can't see her a flood of emotions comes over me, fright, joy, sorrow, laughter, and so many more. Because I know when she's asleep she is somewhere quite, light, and far, far away, talking with Jesus. 

I don't know if thats exactly the dream but it sounds kind of poetic. 

Really I do dream about here quite often, and thats pretty much the dream, kind of wierd that I have the same dream over and over agian.

I miss her a ton, and she is always on my mind. (I even find myself not always being able to consentrate in school) Oops... All day I wonder if she is ok, I worry all the time. And I wish I could be ther asking for here to give me the I LOVE YOU sign...

Thanks to some very tallented ladys Emma and I have gotten some amazing jewlary. Anyway Emma and I got a necklace that has a small picture of mommy on it and I have here wedding ring on a chain arround my neck close to my heart. I would like to thank all of you for your prayers, God is listening to everyones prayers And they are flooding the gates of heaven!

I would would like to thank everyone for the gifts and prayers. I would write each one of you a thank you note, but that would take all year. So Im thanking all of you now, Thanks.

Prayers for me:

1. That I would be able to consentrate more in school!

2. That I would know that God has everything under control!

3. That I would remember that mommy is a strong, strong woman and can fight through this.

4. All of my family will rest well and stay healthy, so we can be with mommy.

 Thanks agian,

    Audrey

 

 

 

 

The Simple Wife Archives: Aug. 12, 2010

Sara G. writes:

The reminder that we need to constantly stay in touch with the Lord and always seek to please Him.

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How do I know a day is successful?

My mom gave me a copy of Sarah Young's Jesus Lives not too long ago. She has Young's first book, Jesus Calling, one some of my other friends are reading too. Given that Mom loves the first one so much, I'm not sure why she bought me a different one, but I'm so glad she did and am just going to go with the fact that God knew this is the one I needed.

I have underlined and written in the margin like you would not believe. (Well, maybe you would since I've always been very up front about my need to read a book--any book--with a Bic crystal [the world's best pen!] in hand.)

Each and every day, God is speaking loud and clear to me through this book. I have no idea if everyone else's books say the same things on the same pages (I often suspect God moves stuff around so it matches my needs!), but each day I open the book with a sense of nervous anticipation.

Because some days it's perfectly soothing to my soul, reassuring me of his love and care and knowledge of me--and other days it's a little bit uncomfortable, pointed and specific to something that needs some addressing. Either way, it's good. God is speaking clearly in its pages--and it is both personal and specific.

Take today, for example. As Toben is helping me think through schedules and expectations and whatnot for our school year ahead, as I ponder what needs to be done and when, as I think about priorities and success, I've been praying that God would grant specific wisdom and direction about every aspect of our family's life and schedule.

Here's what I found this morning:

A successful day is one in which you have stayed in touch with Me, even if many things remain undone at the end of the day. It sounds almost too good to be true, doesn't it? You rarely reach day's end without a sense of failure to some degree. The various means and measures of worldly "success" pull on you constantly, leaving you in a fragmented, unfocused condition.

To avoid confusion, you need a rule of thumb: Seek to please Me. When communicating with Me is your highest priority, I am pleased. The more you commune with Me as you go through a day, the more you walk in My ways. The Light of my Presence illumines the path before you, making sin both obvious and abhorrent. This same Light satisfies your soul. All in all, staying in touch with Me is a good and fulfilling way to live.

If that's not a direct answer to prayer, I don't know what is!

If I could, I'd buy each and every friend I have a copy of this. But I can't, so instead I'll just direct you to my Amazon store where you can purchase one for yourself. It will be $10 well spent--totally worth giving up a couple of lattes.

(Just a reminder, my Amazon store is exactly that--Amazon. I don't see any of your ordering information. Everything is purchased and shipped directly through Amazon; I simply earn a small referral fee when you buy through it.)

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In the comments section, leave the link to your favorite Simple Wife post. Be sure to include your name, blog (if you have one), and a sentence or two about why the post is meaningful or encouraging to you. The Simple Wife Archives are posted Monday, Wednesday and Friday mornings.

903134...

...that's how many page views Joanne's blog has gotten in the last month.  Yes, it has been exactly one month since Joanne's stroke. And for whatever reason thousands have been coming to her blog to find out how she is doing. I am overwhelmed at the response, and I know Joanne is too. I have been kidding her that over her three years of blogging she had about a quarter of a million page views, and since I started to write her blog we've gotten almost a million more. I say to her, "Hmmm...who's the better blogger here?"  Of course she is the better blogger by a long shot but it's fun to hassle her about it. I have also been very direct with her that there are a lot better ways to get blog traffic then to have a stroke.

We've been at this now for one month and something strange has happened--let me try to explain: I used to play a lot of golf, and after each round, I had total recall of every shot that I made during the round--yardages, club selection, wind direct, score, etc. We could sit down over a Coke and I could lay it all out in excruciating detail. Strange as it may seem, I have the same recall about this past month. 

I remember exactly where I was when I got the call for Audrey that Joanne was in trouble. I remember the 911 call, I remember turning around and driving at high speed to the hospital. I remember the frantic phone calls on the way. I remember the parking place I parked in at the emergency room. I remember Jordanna (one of the chaplains) meeting me and taking me back to see Joanne. I remember Joanne asking for her mom and clinging to my hand. I could go on and on from there. I remember all of it, like it is cemented in my memory. I have heard people say things like, "It's all been a blur." But to me it is a series of  images in which I can recall every detail exactly in place for the last four weeks.

If I am honest, there are memories I wish I could be rid of. There are things I saw and conversations I had with doctors that I wish had never happened--obviously I wish none of this had ever happened, but there are a few moments in particular that I think will stick with me until the end of my days. They are moments shared with only the ones closest to me, and each of us will remember them in our own way, will process them and try to come to terms with them. I am sure that over time, the trauma of it will fade--thank God that time does that. But I think it will be a while before the press of all of this lifts. Doesn't mean I am a train wreck, just that I feel a haunted by some of it, that I can feel the weight of it still.

But I can also tell you beyond a shadow of a doubt that God has provided a peace that passes understanding. Sometimes I think some people expect me to be a train wreck and that somehow I must be really stuffing it all in order to keep it together for Joanne and the girls and the family. But that's not the case. Yes, I have struggled with anxiety, fear, doubt, shock and exhaustion. I have cried, I have felt tightness in my chest like I can't breath, I have felt like I am outside my body looking in at a situation that is so bad that it can't possibly be real. But there is a peace there too and I know that it can only be coming from one place, because I know for a fact that I would be that train wreck without my relationship with Jesus. 

A dear friend of mine when through an equally difficult time over a year ago and I remember him saying that it was so bad, he probably wouldn't have lived through it if it weren't for his faith. Now I know exactly what he means. The pain is too much to bear without faith. Simple as that. I feel like I could go into full-on sermon mode here but I'll leave it at that for now. 

Today: there is so much to be thankful for! Joanne is improving day by day. Two weeks ago she was in a coma and today she took a spoon full of ice chips in her right hand, put it in her mouth, chewed it up and swallowed. Today she held her head up on her own for a while. Today she and I thumb wrestled (I won). Today she turned her head towards her mom's voice. Today she waved and smiled at a friend. Today she is a miracle. 

She will probably be in LTAC for at least two more weeks then will head into a rehab hospital. She is already working so hard, to the point of her own exhaustion, with the therapy that she is doing here. But it will be exponentially greater as she moves to rehab. In ICU she was doing 20 minutes of therapy a day. In LTAC she has been doing about an hour between PT, OT, and speech. At rehab she will do a minimum of 3 hours a day and will work her way up from there. She is already working hard and will be working like she never has before. And for those of you who know Joanne, you know what that means. The girl is gonna do work!

I could go on and on with this post. But let me just wrap it up with thanksgiving:

• Thanks to thousands upon thousands who are praying all over the world. The Lord hears the prayers of his people and the prayers for Joanne have been a sweet aroma to him. He has heard and he is moving!
• Thanks to all those who have provided support in so many ways from financial help to meals to words of encouragement. Between Joanne and I we have received over 3000 encouraging emails (I hacked Joanne's account), countless calls, texts, tweets, FB posts, etc.  All the support is truly overwhelming and humbling.
• Thanks to the hospital staffs, nurses, doctors, techs, and therapists that are helping Joanne get better. We have been blessed with some amazing folks whose care for Joanne has been extraordinary. 
• Thanks especially for family (and friends that are almost like family). We have walked through this together and our relationships have grown deeper and more meaningful as a result. Where Satan would look to tear us apart, God has knit our hearts even more closely together. This in itself is a blessing beyond measure.

Prayer request (just one tonight): 

Pastor Brian said last week that when we pray, we should "pray big." I love that. So let's pray big tonight. Let's pray for for nothing less than Joanne's complete healing and restoration. That's a scary prayer because we are putting it all on the line, but I believe that God enjoys nothing more then blowing peoples socks off as he reveals his glory. See ya later sock!

Toben

"Black"

Today the speech therapist (Terry) who we like and awful lot, was working with Joanne. She was feeding Joanne ice chips which she was chewing up and swallowing. So Terry decided to try to cap her trach and see what would happen. The few things that capping the trach can do are allowing Joanne to swallow more easily, breath out through her nose and mouth (instead of through the trach) and it can allow her to speak. So when she plugged the trach I thought that the best we could hope for was the improved swallowing and the breathing part. Never expected to hear a word today. Couldn't have fathomed it. But at the end of the session Terry out of the blue asks Joanne, "What color is your mom's sweater." It took about a second and then Joanne, in a barely audible voice said "black." 

I can't tell you what that did to me. She spoke! I thought they were going to have to scrape Gran and I off the ceiling. When she was in her coma all I wanted to see was her open her eyes. Now that her eyes are open all I was hoping for was to hear her say something.  But I was expecting that would be weeks away. Never thought it would happen today. I am blown away. 

So tomorrow they are going to try to cap the trach for a couple of hours and see how she does. Totally excited to see what happens. Might there be more words Who knows, but the possibility for more is there. Can;t wait for tomorrow morning to come! 

And there is more. She held her head up for a few minutes during OT here and there and she voluntarily looked to the right to see her mom while she was getting her finger nails done. On top of that there was some movement in her left foot while she was laying in bed. And her response times have radically improved. Used to be that I would ask her a question and it would take 10-15 seconds for her to respond with a thumbs up. But today she was responding instantly. She waved to people who entered the room. She gave the "ok" sign , which is the first time she's done that.  She sat up (with lots of help) on the side of her bed a few times. And I'm sure there's other stuff I'm missing.

Tomorrow Joanne might get to go to the OT/PT gym which would be a big adventure for her. Would love to see that happen.

The point is that she made more progress today then we have seen in any other day in the last month. What an amazing, hope giving, exciting day!

Prayer Requests:

1. Dare I even ask for another day of progress like the one we had today? This weekend at church Pastor Brian encouraged us to "pray big" so let's do it! Let's pray that the remarkable progress continues. If it does, Joanne will be in a full rehab hospital before we know it. She has to be able to participate in about 3 hours of therapy daily before she can be moved, but she probably did a good hour today so we are on the way!

2. Praise, praise, praise! God is at work and the prayers of his people are being heard. Thanks be to God for moving and acting. I personally will be praising tonight for the thousands that are lifting Joanne up.

3. There are literally 20 people participating in Joanne's recovery. I would love for all of us to pray for them by name. Gale (OT), Terry (speech therapy), Doreen (respiratory therapy) Dr. Yaeger and Dr. Dryling (primary docs), Bob (case management), Pierre (facilities and our staff ambassador) and too many nurses to count. There are 180 staff at the hospital so I have only named a very few, but these are the closest to Joanne's situation.

4. I usually try to keep the prayer requests to three but tonight I am going to throw in a fourth. A nursing supervisor came in Joanne's room last night and said that in all her years of nursing she had never been in a room that was "more spiritual." There are literally hundreds of prayers, cards, pictures, etc. adorning her room. Pray that this will be salt and light!

Toben

 

The Simple Wife Archives: Nov. 19, 2009

Bobbi writes:

I love this post because...it shows how Joanne encourages us all to study and grow in God’s Word; wherever He takes us.
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Longing

I love a good rabbit trail. Especially when studying God's Word. When something I'm studying leads me someplace else and ends up not quite where I expected, but exactly where I need to be. 

As long as I leave a trail of notes (a good composition book and a Bic crystal are absolutely necessary), I can always find my way back to where I was and get back on the original path.

Anyway.

Yesterday morning I was following contentment through Scripture using the concordance in the back of my NIV Study Bible. Not exhaustive by any means, and subject to translation choices rather than the original languages, but it's what I had at the time and set me down a  path that ended where I'm going. If I can stop rabbit-trailing and just tell you what I want to tell you already!

So.

There's one reference to "contentment" in the Song of Songs. It's not really what I was looking for (which has to do with Psalm 23 as I prepare for Bible study in the spring), but was intriguing (because isn't the Song of Songs intriguing?) and I decided to come back to it this morning.

Here's what it says:

Thus I have become in his eyes like one bringing contentment.
 (Song of Songs 8:10)

Something in me just expands and aches with that. Yes, my soul sighs. 

I long for that to be true of me. A wife who brings contentment to Toben. O God, make this true of me for Toben, I pray!

In the Hebrew, the word that is translated "contentment" is shalom. Take a look at the definition: completeness, soundness, safety, peace, quiet, tranquility, contentment, friendship, peace (from war). The noun comes from a verb that means to be in a covenant of peace, to cause to be at peace, to be complete, to be finished, to make safe, to restore.

It's not something that's just going to happen. It's going to take some effort on my part. Some asking him how I can do this--even if the answers are uncomfortable. O, to be brave!

Am I causing Toben to be at peace? Am I a safe person for him? Does he feel safe with me, or am I causing him to hide? Am I truly a helpmate? Do I refrain from warring with him? What am I doing that brings him restoration?

We're headed up to a cabin in the mountains in a few weeks for four days of intensive counseling. Our eighteenth anniversary is coming up and it's been a long time since we've sat down and really focused on where we are, where we want to be, what might need some adjusting or just plain fixing.

We all settle into routines and schedules and life just kind of goes along sometimes without much thought or intention. I suppose it will be like going to the doctor for a full check-up.

I'm a little scared. Silly, but true. And yet I'm hopeful too. And eager for time to talk and think and dream and learn how I can become the wife I long to be.

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In the comments section, leave the link to your favorite Simple Wife post. Be sure to include your name, blog (if you have one), and a sentence or two about why the post is meaningful/encouraging to you. The Simple Wife Archives are posted Monday, Wednesday and Friday mornings.

Cool Toys for Serious Therapy

Turns out that some fun electronics have serious application for stroke survivors. Both the Wii and iPad have been shown to aid in rehabilitation, and thanks to the generosity of friends we now have one of each.  How cool!

A friend and co-worker of Dad's hooked us up with the Wii. The minute I saw the girls playing with it (they have claimed it until Joanne is ready to take it over) it was instantly clear how this could be of huge benefit to Joanne's rehab in terms of hand/eye coordination and muscle movement, etc.. I can't wait for here to regain her title as the Wii bowling champion which she proudly claimed at the Franklin's on their Wii system a few months back. And she has the trophy to prove it.

Another group of dear friends decided that an iPad would be just the thing for Joanne to have as she recovers, allowing her access to the e-world from bed (I can't wait for her to be blogging and twittering again). So they put the money together and I was able to purchase the iPad for her a week ago. I got it all set up with her email, blog, twitter, facebook and other apps that she likes so that when she is able she can plug back in. I was also able to active the 3G on it so that Joanne can have access whether or not she is in a wi-fi hotspot. So far both hospitals have had them, but the 3G will guarantee that she will never be out of touch.

Here is the cool thing: the nice young guy at the Apple store asked what we were getting the iPad for and I told him that we planned to use it for Joanne who is recovering from a stroke. Without missing a beat he said, "We have an app for that." I almost laughed because it seemed like such a random thing, like a total cliche. But he took me to the app store and sure enough, there is an app to help people with brain trauma or other speech communication problems communicate.

Its called Proloquo2go and it looks amazing! Joanne wouldn't be able to use it just yet because her motor control isn't quite up to speed yet, but over the next few weeks, with the approval of her speech therapist, we will be downloading it and putting it into use. It is one of the most expensive apps out there, but thanks to the generosity of these friends we will be able to purchase it for Joanne too. I can't wait for her to get to use it. 

Until then I have been using the iPad to manage Joanne's email account which contained 3200 messages when I finally got logged into her accounts last week! I have sifted through and gotten the spam out, and then have been reading her emails from friends that have come through. I can guarantee that the iPad is going to be the perfect tool for her in her recovery--much lighter and easier than her laptop. 

So, many, many thanks to the friends that made the Wii and iPad possible! We feel so loved and supported in both of these creative gifts. 

Toben

 

 

On Holding Hands

This late afternoon and evening I have had Joanne all to myself. I needed this. I like having friends and family around for sure, but sometimes it is nice to just sit and hold hands for a little bit in the quiet--a quiet aided by the fact that it is evening and a weekend so the activity on this floor of the hospital is at a minimum. A nurse or respiratory therapist drops in from time to time just to make sure everything is OK but other then that, we are left alone. 

I have been holding Joanne's right hand for the last little bit and have been fixated by it. Her right hand is the one with which she communicates. She can give thumbs up and thumbs down. She can squeezes the hand she's holding and can wave hello and goodbye. She can make the "I love you" sign and can say "yes" and "no" in sign language. She can count on that hand. She uses it to scratch her nose or her ear. And occasionally it goes on an exploratory mission to the scar on her head or the trach at her throat as if she is curious to see what's is really gong on there. 

She posses great power in her right hand. A month ago it was one small part of a fully animated person. Today it is the most animated part of a less responsive person. It is powerful because it is doing all the talking for her right now. It is powerful because it gives us all a lift, gives us assurance that she can hear, that is with us.  It let's us know that even though her eyes may be closed, she is still listening and able to respond. 

I have never had much reason to really study Joanne's hand. To really study it.We've been holding hands for the better part of 20 years, but I never really examined it very closely. It is a slender hand, with long, thin fingers. It is cool and dry to the touch. Her nails are currently unpainted--something we may have to remedy next time Gran or Audrey or one of her other BFFs are here.  Her hand feels almost fragile, elegant, vulnerable.

But right now it is the most powerful part of her body. It is the part that communicates life, love, and hope. 

Prayer requests:

1. Please pray that Joanne would rest well tonight. She is coughing quite a bit and needs to be suctioned frequently through her trach to clear her airway. Please pray that nurses and respiratory therapist stay on top of this and keep her breathing easily tonight.

2. Praise God for family. The whole lot of us got to be with Joanne for some part of her day today. I can't imagine what this would be like with out the Friedenstein/Haufschild/Heim  clan around to love and support her (and me). What a gift and blessing from God!

3. There are at least 50 other patients in this hospital, most of whom are in pretty bad shape (otherwise they wouldn't be in LTAC). Some are in worse shape then Joanne. It strikes me that probably some of them don't have anyone to pray for them. If you could lift up the others who suffer here that would be a blessing to many.

Toben

 

Friday

Joanne brushed her teeth today with the help of Gale, her OT. Gale held up the tooth brush  and asked Joanne if she knew what it was and what to do with it. Joanne was able to get a grip on it and moved it to her mouth, She was able to move it back and forth just enough for us to see that she knew what she was supposed to do.  That was pretty cool. She did all the rest of her exercises and then got to go back to bed, where she soundly slept most of the rest of the day. Gale says that even the smallest moves and excercises are exhausting to her. 

Kristen was in for a number of hours and it was nice to sit and visit with her. She brought along the cards that so many have sent to her house and a hole-punch and put as many cards as she could on a ring so that they will be easy to read to Joanne at her bedside. I feel fortunate that our family enjoys each others company--otherwise those would be some long, awkward hours spent together. But our conversation is easy. 

To be honest we spend a lot of our time attending to Joanne. Yes, there are times where we sit and talk, do email, update twitter, etc. But a lot of time is taken up just taking care to make sure that Joanne is comfortable.  We check her temperature: cold feet gets socks, cold legs gets an extra blanket. We position her head frequently so that her neck doesn't get stiff. We arrange pillows and try to keep her from lying in one position for too long (the nurses do that too). We bother the nurses to do this and that. And we talk to her most a lot while this is going on. It is sort of like a running narrative. Joanne doesn't respond other then cracking the occasional smile, but we have been told that she can hear us and understands what's going on around her. So we keep the conversation going.

Of course the nurses, techs and therapists do the same thing, always explaining to Joanne what they are doing with her or what they need her to do. So we are following their model.

One tough thing: the hospital is pretty far from the house. On a good day it's about half an hour away. Today in traffic it took me and hour and a half. It took Gran over two hours last night. I am hopeful that when Joanne goes to rehab it'll be closer by. It was great at Littleton to just hop in the car and be there in ten minutes. Made things a little more flexible. But heading to the LTAC is a commitment! We are committed to being with Joanne all day every day if at all possible, leaving her alone only at night to get her sleep.

Heard from a friend of a stroke survivor that having people around was a huge part of her recovery so even though she sleeps through most of our time there, it's still good and right for us to be with her. I honestly wish it was easier to spend the night at the hospital (Gran is the only one who has done it so far). When she is more alert, and if they chart that she is awake much in the night, I suspect that I'll pull a few over-night visits. I just hate the thought of her being awake and alone. 

Tomorrow is her one week anniversary of moving to LTAC. I'll blog more about htat tomorrow.

Prayer request:

There is just one: that Joanne would be awake and alert during some of the day and that she would rest well at night. If she perks up a little will make the therapists jobs easier and she will be able to progress a little faster. But she also needs peaceful sleep--it would just be nice if she waited for the sun to go down before zonking out! Of course every patient is different and she is doing what her body requires right now. This is all going to happen in God's timing.

Toben

P.S. The TobyMac show with Audrey was a lot of fun. 

 

 

 

 

The Simple Wife Archives: Aug. 18, 2008

 Meredith writes:

My husband and I were beginning to practice "Sabbath" about the same time that Joanne began practicing that with her family. 

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Ceasing on the Sabbath

I don't know why, but I think it's easier to start with the "do nots" when it comes to understanding the Sabbath. Just some weird way I'm wired, I suppose. I want a clear list of what I can't and should do--and that way I can check off all the little boxes and we'll all be just fine.

But the Sabbath isn't really like that, I'm learning. So much of it is about motive. What honors the Sabbath for you may not honor the Sabbath for me. Which means it's something we each have to discover and pray and seek God's guidance in for ourselves.

And isn't that the point, really?

I mentioned Lynne Baab's book, Keeping the Sabbath, a couple of weeks ago. One of the things I appreciated was questions to help wrestle through what it means to keep the Sabbath for me and my family.

She had something to say that makes sense to me about figuring out the "ceasing" part first:

Remember, we are striving to obey the spirit of the sabbath law. We are not trying to make rules or create new burdens. We are ceasing from some activities to make space for resting in God and enjoying the gifts he's given us.

I need to cease from some things in order to make space for what I will do on the Sabbath. If I add without subtracting first, then it's all too easy to get overwhelmed because the day is just too full. I have to clean house, as it were, before I bring in something new. Otherwise it's just clutter.

Here are just a couple of the questions she asks in her chapter, "A Day Without a 'To Do' List":

What do you need to cease from?

What aspect of your life might be losing its value because of overuse?

Your answers to those questions will probably be different than mine. But as I think about it, I need to cease from work, from chores, from my never-ending to do list. I need to cease from the hustle and bustle of the outside world--shopping, running errands. I need to cease from the noise of everyday life.

The second question is a little harder for me. When I think of overuse, I think of the computer. I love my MacBook, but I spend LOTS of time on it--particularly when I'm in the middle of a writing project. Even just reading blogs, surfing the net, and responding to email takes up big chunks of my day.

I am a reader--and always have been. And when I'm on a reading tear, the world could stop and I wouldn't notice! I do read lots of nonfiction, but when I read for fun, I read for fun. Nothing too heady, nothing on Oprah's book club, just total escape into the world of spies and adventure. 

I say a reading tear, because I can easily ignore my family for hours on end and escape to the underwater world of Dirk Pitt and Clive Cussler novels. I overdo it easily.

For my children, overuse makes me think of the television, the computer. It's changing now that school has begun (we do not turn the television on Monday-Thursday), but as I look back on the summer, it seemed that the TV was on and someone was playing on Webkinz or Littlest Pet Shop or American Girl or Build a Bear every moment.

As I've thought about my answers to those questions, a couple of things have come out of it:

• No computer for me or the girls on Sundays.
• No television (with the exception of watching movie as a family) on Sundays.
• No homework for the girls on Sundays.
• No chores on Sundays.
• No shopping or errands on Sundays.
• No fiction for me on Sundays.
• Nothing on Sundays that doesn't include the whole family--that means an automatic "no" to any birthday parties on a Sunday afternoon, Girl Scout activities, or playdates.

That's an awful lot of NO as I look at the list. But the cool thing is that some of it feels like a relief--no grocery shopping, no cleaning the house, no laundry! 

But like Baab said in her book, all those "no"s create space for the things we will do on Sundays.

This is getting entirely too long and I have to go take Audrey to her final vision therapy evaluation, so more on the YES stuff soon! You deserve a cookie if you've read through this whole thing--and maybe a cup of tea to go with it. Go treat yourself!

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In the comments section, leave the link to your favorite Simple Wife post. Be sure to include your name, blog (if you have one), and a sentence or two about why the post is meaningful/encouraging to you. The Simple Wife Archives are posted Monday, Wednesday and Friday mornings.

TobyMac Tonight

Audrey is a huge TobyMac fan so we are off to his Winter WonderSlam concert tonight.We bought tickets a couple of months ago and Audrey has been excited about it ever since. So I am excited for her too. Of course she keeps trying to figure out how we are going to get back stage to hang out with Toby and the rest of the band. When Audrey was younger we went to a lot of concerts and because of my job we got a lot of back stage access and face-time with various artists (including Toby) so now when we go to shows she just sort of expects that we should get to go back stage. Poor kid! I'm sure the show will be great. I have always thought that TobyMac puts on the best show in Christian music.

This morning Joanne was in the chair again when I got here. It is so cool to see her out of bed, and I am sure it's got to feel good to her after spending 22 hours a day on her back. We try to turn her, shift her weight, wedge pillows here and there to try and keep her comfortable, but there is only so much you can do. This afternoon it is pretty obvious that she is uncomfortable and we don't seem to be able to fix it. Can't wait for her to get to the point where she can tell us what's hurting so we can fix it. Right now all we can do is guess, and that is frustrating. 

She has a good OT session this morning. She worked with a few different colored batons, moving them to the left and to the right and stacking one inside the other. She seems to be able to recognize colors and in moving from right to left she is demonstrating that she may not have to much trouble with "left side neglect" which is a condition where she simply wouldn't be aware of the left side of the world. Sounds strange, but apparently it's pretty normal for folks who have had a stroke like hers: they just don't comprehend "left." So it's cool that she seems to recognize her left.

Had great visits from a her Bible study ladies this morning. the chatted a lot and Joanne gave many thumbs up, hand squeezes and cracked a few smiles. So good to see that. Joanne was definitely tuning in even though she had here eyes closed much of the time.  She did open them up from time to time, but she still seems to exist in a state somewhere between being awake and asleep. Maybe tomorrow they are going to start her on a drug called Provigil that is supposed to be a brain stimulant. Interested to see what effect that has on her. 

Gran is here now and I am leaving in a little bit to get the girls from school. I think we'll head home for a little rest before Audrey and I leave for the concert. It's going to be a late night for her tonight and I don't want her to come completely unglued when she has to get up for school tomorrow. Of course, as a 12 year old girl, chances are pretty good she'll come unglued regardless of the rest she gets this afternoon.  Had a good chat with one of Joanne's BFFs who also has a 12 year old daughter and it turns out that Audrey is completely normal--being a 12 year old girl is just tough, no matter how you slice it. Add the mom situation on top of that and I'm honestly surprised that she is keeping it together as well as she is. Fortunately for me, I have Gran and Papa around to help me keep the wheels on her emotional roller coaster. Still, it's a tough age...

Prayer requests:

1. Pray for Audrey to just have a great time tonight at the concert. I would love for her to be able to forget her troubles for a few hours and just have fun dancing around and singing along at the top of her lungs.

2. Continued progress in all Joanne's therapies (OT, PT, and speech). She has lost a lot of muscle tone in the last three weeks and needs to rebuild some of that through these therapies. Also, she needs energy, strength and stamina to fully participate. Even the smallest moves or activities drain her. We need God to provide supernatural strength!

3. After watching Joanne is obvious discomfort for a while today I would love prayer for her body, that she would be able to get comfortable and rest even though she is unable to move herself into comfortable positions.  Give all of us who care for her the wisdom to know how to help her be at ease.

Toben

Check out Joanne's new digs

A few days ago, Toben posted about Joanne's room getting decorated. Kristen did an amazing job dazzling her room with encouraging decor. Kristen--a very talented photographer, in case you didn't know--took some great photos of the room. So check it out here.      -Posted by Janna

Image Source: KH Photography

Lots of Action

I spent about five hours at the hospital this afternoon and sat down for maybe a total of ten minutes! There was so much going on today.  And that doesn't include all the good stuff that happened while Gran was with Joanne in the morning. She got to be there for speech therapy and physical therapy. A clarification: speech therapists do a lot more then help people speak. Terry, Joanne's ST, is responsible for everything having to do with her throat. She is responsible for swallowing, breathing, eating, drinking and all sorts of other important stuff. 

So today the ST gave Joanne some ice chips and she was able to chew them and then swallow. Based on that ability and some other indicators she was able to get to a smaller trach.  That started a bit of an adventure. Usually moving to a smaller trach takes all of 30 seconds but Doreen from respiratory couldn't get the existing trach out. She had another tech try and he couldn't get it out either. So they called in the big guns. Dr. Yaeger scheduled Joanne for a procdure at 3:45 that involved sending a fiber optic cable into her throat through her nose to see what in the world was going on down there.  And he asked me if I'd like to watch and said I could hold Joanne's hand while he did it. I jumped at the chance.

So the appointed hour came and Joanne was moved to a gurney and taken down to the special procedures room and prepped for the scope. Wow! What a crazy deal. They number her up with lidocaine, sent the camera in through her nose and figured out what was going on. Apparently Joanne had a lot of swelling left over from the breathing tube that she had in for two weeks but the trach was in good shape for removal.  So they gave it another little tug and out it came. The new smaller trach was back in in about 15 seconds and the camera revealed that it gives her a lot more space in her airway to breath, swallow and maybe even eat and drink when the time is right.

And here's another thing we learned: they will leave this trach in until Joanne has her bone flap replaced in another six weeks  That way they won't have to put in another breathing tube, which is a pretty lousy experience.  So, my hopes to get rid of the trach all together are put on hold for now. But I tell you what, when that thing comes out I will be so excited! Patience...

There were many other doctors, nurses, techs and therapists in and out of Joanne's room today and it was hard to keep track of them all.  Still getting used to the new names and faces.

Prayer requests:

1.  Please say a prayer for Jeremy and Heather Noce. They are friends of friends and Heather is in LTAC for an aneurysm/stroke as well. They are about 5 weeks further down the road then we are in this process and have a long road ahead of them too. They have two children: 4.5 and 7. 

2. Please pray for stamina for Joanne. As she is able she will be doing more and more work each day up to about 2 hours a day before she moves to a rehab hospital. It's going to take all the strength she can muster to work up to that point. Please pray that God would give her a strength that can only come from him!

3. It's not too soon to start praying that Joanne will get into a great rehab facility. Gran and I are going to take a little field trip to a couple of recommended facilites sometime next week.  Joanne will be at this next facility for a long time so getting into a good one is a big deal. Please pray that God would guide, direct and open doors in this next big decision.

4. Praise, praise, praise! Joanne is moving forward! Yes, they are little steps, but they are steps none the less. We continue to hear from many folks working with that Joanne has a good shot at significant recovery. Thank God for that!

Toben

The Simple Wife Archives: Dec. 15, 2010

Shelly writes:

This is post and this one are about boundaries, something I have had a hard time with sometimes in my walk. These posts put it SO beautifully, and use Psalm 16 to show us the truth about freedom within boundaries on such practical level!

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Birds and songs and boundaries

Our song is sweetest when sung from within our boundaries.
adapted from the words of Psalm 16 

I love Psalm 16--it's a tender one, one that has been a lesson for me to learn during the past year.

You have assigned me my portion and my cup;
You have made my lot secure.
The boundary lines have fallen for me in pleasant places;
Surely I have a delightful inheritance! 

...and I love birds and nests too, so when I saw this tutorial over at Pretty Ditty I knew I wanted to make them. (You really want to click on the link and visit her blog. She makes lovely things!)

I finally got all the supplies gathered today and had some to craft now that my Greek final is done. (Pretty sure I aced it, except for one answer I had right and then went back and changed to something wrong. Grr.)

 

As I was working on this, taking her idea and adapting it to my style, it cried out the words of Psalm 16 to me. The place I want to build my nest, the place I find the freedom to sing a sweet song is within the boundaries God has drawn for me. Within his boundaries I find freedom and joy, rest and peace. When we surrender to what God has assigned, when we accept our portion and our cup, we are bound to be free.

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In the comments section, leave the link to your favorite Simple Wife post. Be sure to include your name, blog (if you have one), and a sentence or two about why the post is meaningful/encouraging to you. The Simple Wife Archives are posted Monday, Wednesday and Friday mornings.

It's the Little Things

Today when I walked into Joanne's room she was sitting in a chair. It's actually more of a recliner but it was just amazing to see her out of bed! She was able to sit int he chair for almost two hours, during which time she did a little OT. Today she worked on holding her head up. And she did it, for almost a minute without help. But it really took it out of her. After about half an hour the physical therapist used this amazing contraption to lift her out of the chair and get her back into bed. After which she promptly fell asleep for a few hours. 

It's is incredible how, for those of us that have been with Joanne almost non stop since the 11th to see her make these little steps because to us they seem monumental! It wasn't that long ago that she was in a coma, so the fact that she can sit up and hold her head steady mostly unassisted for a minute is awesome. But seeing her workout today made it pretty clear that she has a lot of hard work ahead of her. Her brain is literally re-learning, re-wiring to allow her to do things with an entire hemisphere of her brain out of commission. We are truly "fearfully and wonderfully made."

Was stuck by this bit of information today delivered by her therapist Gale: we ask Joanne thumbs put questions all the time. Like, Joanne, if you want me to keep reading to you, give me a thumbs us. Trick is that if that thumb doesn't snap to attention almost immediately then we assume she means no. Gale told me today that for every question we ask we need to be prepared to wait for 30 seconds for a response. So crazy! For those of us without a traumatic brain injury we can respond to questions almost instantaneously but it takes time and effort for Joanne for the question to be received, comprehended and acted upon. She's just moving at a slower pace, processing differently for the time being.

Interestingly enough, they are talking about putting Joanne and Ritalin. Apparently it has proved to speed up processing in stroke patients. It acts as a bit of a stimulant, which Joanne could use to counterbalance the sedative effects of the ant-seizure meds that she is on. Been trying to get some other meds related questions answered by the staff that haven't been forthcoming, but tomorrow come heck or high water I am going to get some answers!

Prayer requests:

1. We need Joanne to stay awake to take the greatest advantage of the therapy that she has been doing. But at this point she isn't awake very much--some of that is meds, some of it is brain injury and some of it is the fact that it takes so much effort to do the little things that she just wears out easily. So, a more alert Joanne gets more out of therapy.

2. Hoping to build great relationships with the staff working with her. We are still feeling our way through the early stages of some of these relationships but we may be here for up to a month so the more we know and care about the staff the better our time there will be.

3. More baby steps! At this point a wave, a smile, a nod a squeeze or a thumbs up are a big deal to us.. Would love to see more of these little signs of development over the next days and weeks.

Toben

P.S. Audrey and I did something very normal today: we got our hair cut. The gal that does our hair (Jlynn at Toni and Guy) lost her dad to a brain injury a few years back when she was about Audrey's age so she was incredibly sympathetic. She spent almost an hour doing Audrey's hair and made her feel really special. Audrey left with a definite spring in her step. So, thanks Jlynn!